research : disease studies

Genetic Analysis of Limb Malformation Disorders
Participant Consent Video

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Link to complete video.

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1. Introduction
2. Why is this research being done? Are there benefits of taking part?
3. What is involved in the study? Standard research procedures, Health information, Medical records and photographs, DNA Collection
4. Non-standard research procedures
5. What are the risks of research procedures?
6. Genetic analysis: What are we looking for and how will we try to find it?
7. Types of genetic information we may find/If we identify changes that cause your condition
8. Other changes we may find
9. Data sharing/Sample sharing
10. Risks of genetic analysis and data sharing
11. What about confidentiality?
12. How long will I be in the study? Are there any costs?
13. What are the other options? What are my rights as a research participant? Whom do I call if I have questions or problems?